Back in 2009, a lot of people asked me what I thought aboutÂ Princess and the Frog, the film Disney said trumpeted as featuring its first African American princess. My gut reaction was, I’ll get excited when they release the film with theirÂ thirdÂ black Disney princess. I mean, leaving aside for a moment whether it’s progress to make the princess industrial complex an equal opportunity exploiter, what I find, whether it’s women in general or women of color in particular, is that Hollywood (and Disney especially) makes a Big Deal when they finally, after oodles and oodles of movies
Today I got a press release from one of my least favorite breast cancer organizations: Keep-A-Breast, the folks that brought you those annoying I â™¥ BoobiesÂ bracelets. I’ve written about this before. There are so many things wrong with Keep-A-Breast it’s hard to know where to begin. There is, of course, the whole issue of the blithe sexualization of breast cancer, a disease that, trust me, is anything but sexy (hey, Baby, want to see my mastectomy? I didn’t get to “keep a breast,” dang it). I wrote back in 2010 about how the fetishizing of breasts comes at the expense of the bodies, hearts and minds attached to them.Â
What disturbs me more, though, is the way that focusing on a youth demographic–especially early detection in a youth demographic–is doing a disservice to the cause of breast cancer. Campaigns like this (as I said in last year’s piece, “Our Feel-Good War Against Breast Cancer”) Â are usually motivated by caring and grief: the woman who began Keep-A-Breast lost a friend to breast cancer in her 20s. But focusing on early detection–that Â is not going to reduce young women’s death rates from the disease.Â Keep-A-Breast urges girls to perform monthly self-exams as soon as they begin menstruating. Though comparatively small, these charities raise millions of dollars a year â€” Keep A Breast alone raised $3.6 million in 2011. Such campaigns are often inspired by the same heartfelt impulse that motivated Nancy Brinker to start Komen: the belief that early detection could have saved a loved one, the desire to make meaning of a tragedy.
Yet thereâ€™s no reason for anyone â€” let alone young girls â€” to perform monthly self-exams. Many breast-cancer organizations stopped pushing it more than a decade ago, when a 12-year randomized study involving more than 266,000 Chinese women, published in The Journal of the National Cancer Institute, found no difference in the number of cancers discovered, the stage of disease or mortality rates between women who were given intensive instruction in monthly self-exams and women who were not, though the former group was subject to more biopsies. The upside was that women were pretty good at finding their own cancers either way.
Beyond misinformation and squandered millions, I wondered about the wisdom of educating girls to be aware of their breasts as precancerous organs. If decades of pink-ribboned early-detection campaigns have distorted the fears of middle-aged women, exaggerated their sense of personal risk, encouraged extreme responses to even low-level diagnoses, all without significantly changing outcomes, what will it mean to direct that message to a school-aged crowd?
Young women do get breast cancer â€” I was one of them. Even so, breast cancer among the young, especially the very young, is rare. The median age of diagnosis in this country is 61. The median age of death is 68. The chances of a 20-year-old woman getting breast cancer in the next 10 years is about .06 percent, roughly the same as for a man in his 70s. And no one is telling him to â€œcheck your boobies.â€
â€œItâ€™s tricky,â€ said Susan Love, a breast surgeon and president of the Dr. Susan Love Research Foundation. â€œSome young women get breast cancer, and you donâ€™t want them to ignore it, but educating kids earlier â€” that bothers me. Here you are, especially in high school or junior high, just getting to know to your body. To do this search-and-destroy mission where your job is to find cancer thatâ€™s lurking even though the chance is minuscule to none. . . . It doesnâ€™t serve anyone. And I donâ€™t think it empowers girls. It scares them.â€
Did you hear the big news? Earlier this week theÂ Supreme Court declined Easton Area School District’s appealÂ to ban Keep A BreastÂ i love boobies!Â bracelets in their schools. Below is an excerpt of a responseÂ blog I wroteÂ on how I felt. Although this is a huge victory for freedom of speech for students everywhere and Keep A Breast we know our fight isn’t over. We still need your support to keep educating young people on the importance of breast cancer prevention. I hope you will consider making a donation right now. Will you support Keep A Breast?
Iâ€™ve been camping since last Saturday, so wasnâ€™t here when my story on contralateral mastectomy was published in the New York Times. Â In its aftermath, Iâ€™ve gotten positive feedback from researchers, physicians and advocates, including Karuna Jagger of Breast Cancer Action, who wrote this follow-up; Gayle Sulik, author of Pink Ribbon Blues and founder of the Breast Cancer Consortium; and Susan Love, author of Susan Loveâ€™s Breast Book (bible for the newly diagnosed)Â and medical director of Dr. Susan Love Research Foundation. The blogger who goes by The Risky Body also wrote two really thoughtful responsesÂ aimed at–though not exclusively for–the community of women with a known BRCA mutation.
Iâ€™ve Â received email from individual women in the throes of making their initial treatment decisions; from women who chose CPM and later were diagnosed with metastatic disease; and from those for whom the decision to remove the healthy breast went horribly, painfully awry (reminding me that we tend to underplay the risks and potential complications of surgery.
Iâ€™ve also read online the articles in response to the piece by those who chose CPM and are happy with that decision or who want to explain their point of view. Like thisÂ one on Slate, and this one on Forbes. So for them, in particular, there are some things that Iâ€™d like to clarify. First of all, I want to reiterate that the data on survival does not apply to those who carry a genetic predisposition to breast cancer (such as a BRCA mutation) or those with a strong family history of the disease. It applies to women who were at average risk of contracting breast cancer and are at average risk of contracting a second cancer. The vast majority of women choosing CPM fall into this category, by the way.
There were so many things I couldn’t fit into a 1200 word article–had I been able to write something longer I could’ve been far more comprehensive and nuanced. That said, I made the points that were most important to me to make. Two interesting facts I couldn’t fit in: one, this trend towards CPM has happened even as treatment reduces the likelihood of contracting a second cancer. I find that interesting. Also, this is an American phenomenon: according to Todd Tuttle, chief of surgical oncology at the University of Minnesota (Ski-U-Mah!)Â there was not a similar uptick of CPM in Europe over the time period studied. Itâ€™s worth noting that there is also no greater incidence of contralateral cancer or death from the disease there over that time period. Nor do European women seem to choose CPM for cosmetic or other reasons cited by American women.
Why the difference? One reason, according to researchers, is the rise in use of MRIs, which have an inordinate rate of false positives, subjecting women to the physical and psychological stress of unnecessary biopsies. According to researchers at Sloan-Kettering:
Women who had a breast MRI as part of their preoperative evaluation were three times more likely to choose CPM,â€ she says. MRIs may detect additional areas of breast cancer that are missed by mammography, but the rate of false positives is quite high. â€œIf the MRI finds something that looks suspicious, many women say, â€˜I would rather just have a double mastectomy than go through the process of having biopsies on my other breast.â€™
Another reason, is that choices are not made in a vacuum. They are made in a cultural, political and economic context. Â As I wrote in my New York Times Magazine piece last yearÂ (and Karuna Jaggar wrote this week, in the piece linked above),Â pink ribbon culture has inadvertently stoked a fear of breast cancer so that women consistently over-estimate their risk of disease. In the end, I believe, that over-estimation comes at the expense of effective advocacy.
My goal with the CPM piece, as with all my pieces on breast cancer, was to report solid information that has not been adequately reported in mainstream media, information that can reduce harmâ€”such as over-screening and over-diagnosisâ€”and tremind people of what is important about breast cancer advocacy: reducing the number of women who are harmed by and especially who die of breast cancer. To my mind that means focusing on potential environmental factors involved in the disease; focusing on prevention; focusing on less toxic and more effective treatment; understanding DCIS and, in particular, understanding the mechanisms of metastatic disease. One concern I had about the rise of CPM–and the statistics showing the rise was due to over-estimation of its benefits and over-estimation of the risk of a second cancer– was that by giving women a false sense of security, misleading them into thinking they were improving their odds at survival, it would detract attention and resources from where they need to go. I canâ€™t imagine that anyone, including those who chose CPM for some other reason, would think that was a good idea. I can’t believe anyone, including those who chose CPM for other reasons, would want women to choose it because they are misunderstanding risk and benefit. I can’t imagine anyone including those who chose CPM for other reasons, would want women choosing CPM because they think it will save their lives when multiple studies–and this new one in particular–have shown that it won’t.
The research on CPM is clear, in multiple studies, that many women pursue it both because they over-estimate their risk of a second primary and because they believe CPM will be life-saving (I’ll put some links at the end of this post). Again, I would think that regardless of why you personally chose CPM you would believe it is important that newly diagnosed women make their decisions based on accurate information. In Todd Tuttleâ€™s research, cited in my New York Times Magazine story, women estimated their chances of contralateral cancer to be 30% over 10 years when it was actually less than 5%. Maybe the women who have written in response to my piece that they chose CPM for other reasons already knew that, but obviously many women do not. Do you really want them making decisions about surgery based on such misinformation?Â That scares me. And itâ€™s wrong from a public health perspective.
From that perspective women should understand, loud and clear, that CPM is not, for a woman at average risk of cancer, a medical necessity. As Steven Katz said to me during our interview, conversations with the newly diagnosed should start with, â€œCPM is a futile procedure in terms of prolonging life.â€ Then– again from a public health perspective–we can have a discussion about whether surgery should be the frontline treatment for those with intense fear or anxiety about cancer even when that surgery has no medical basis.
A number of women have written to me and said they had CPM for cosmetic reasons. Thatâ€™s a choice, certainly, as any cosmetic procedure is a choice. In making it, you certainly have to balance the risks of surgery with other factors. Personally, Iâ€™d like newly diagnosed women to know that I donâ€™t feel at all â€œunbalancedâ€ with one fake breast and one real breast. My breasts are not asymmetrical, or no more asymmetrical than the average woman’s or than they were before after 50+ years of wear and tear. With my clothes onâ€”including scoop necks and low-cut bathing suits–you canâ€™t tell at all. Naked, my breasts look about as good as they did before, though the reconstructed breast has more scars both from where the tumors were removed and because in the last four months Iâ€™ve had two biopsies on that side (both turned out to be–guess what?–not one but TWO rare surgical complicationsâ€¦.). Also, again in the spirit of full disclosure, my previous radiation compromised the nipple-sparing surgery, so while I have a nipple it doesnâ€™t look as good as it might or like the one on the other side. CPM wouldn’t have changed that. But if those things werenâ€™t true, youâ€™d have a hard time visually distinguishing the fake from the real. Internally (i.e., to me) they do feel different. My natural breast feel natural. My fake one feels like I’m wearing a tight bra all the time that I can’t take off. Women who are considering implants (I have a DIEP-flap because my previous radiation makes implants difficult) can certainly wait to have a second breast removed and reconstructed to see how they feel about it, even though it does mean further surgery. But, really, thereâ€™s no rush. DIEP has to be done all at once, which complicates the issue. Ultimately, I would advise a woman considering her choices who is concerned about symmetry to talk to those who have had DIEP on one side and on both sides and ask, if possible, to see their breasts. Iâ€™m happy to show mine (but only in personâ€”not on the web!!) . You really have to see reconstruction in person to totally get it.
As for those who have decided to go flat, that too is an option and always has been. I definitely considered it. As long as it’s understood that it’s not life-prolonging for those at average risk or that what you’re doing is somehow implicitly superior (in terms of treatment or in terms of maternal sacrifice) to those who, say, have a lumpectomy and radiation.
Anyway. Iâ€™m not here to litigate anyoneâ€™s past choices, including my own. My belief is that you make the treatment decisions that you make with the information you have at the time of diagnosis understanding that such information may change, become obsolete or incorrect. And you donâ€™t look back. When I was originally diagnosed chemo was not recommended. A few years later, all women under 40 with cancer were treated with chemo as a matter of course. Oops. A few years after that, they went back to the way it was when I was first diagnosed. Oops again. I was among the first women to have a modified sentinel node biopsy. A few months earlier, they wouldâ€™ve done the big scoop. A few months later, I would have had an actual sentinel node biopsy. So it goes. I’ve been around this world a long, long time. Longer than most patients, I’d wager. I’ve seen a lot.
I think about the women who had the Halsted radical mastectomy (which, according to Robert Aronowitz, even he knew would only prevent local recurrence, not metastatic disease); I wonder how they felt when it first became clear that lumpectomy and radiation would have sufficed. Were they resistant? Angry? Sorry? Did they celebrate that other women, that their own daughters, would not have to go through what they did?
Because that is the great news, isnâ€™t it? Women at average risk do not have to fear keeping their healthy breast when diagnosed with cancer. Iâ€™m so grateful for that for the sake of anyone diagnosed in the future. And again: shouldnâ€™t we be making sure that newly diagnosed women know that so that they make their decisions from a perspective of the greatest knowledge?
Finally, Â as promised, here are some links beyond those listed above. I would encourage anyone interested in this issue, whether or not you have chosen CPM, to actually look at the research.
I imagine that now I will get a lot of comments from women explaining why they personally had CPM. That’s fine, I guess. But not the point. The point is to ensure women have a realistic understanding of what the procedure can and cannot do for them. It is tragic and even cruel for someone to have CPM based on the false belief that it will prevent death. I hope we can all agree on that.
So you know when you’re watching CNN or MSNBC or FOX news orPBS or whatever and they have some talking head on a monitor chatting with the host? Well here’s how they do that when you’re the guest: you are sitting alone in a black-walled, darkened room staring into a camera lens. You do not see the host. You do not see the other guests. You do not see yourself. You have no idea whether or not you are on-screen at any given moment. You hear the host and the other guests through the earpiece and you talk earnestly at nothing at all. It’s a seriously weird deal. But that’s how it goes, especially if you live in California and most of the media is in New York. I never get used to it. But I did it the other night because I was asked to be on the PBS News Hour with Gwen Eiffel and, really, how cool is that?
Anyway, here’s how it came out:
The BarbieÂ Sports Illustrated Swimsuit IssueÂ cover got all the buzz, but Â it was nowhere to be found yesterday at our local book store. Instead, this cover caught my 10-year-old’s eye:
“Ick!” My daughter said. “What does that have to do with sports, Mom?”
“Absolutely nothing,” I responded.
She Â glanced at the next magazine over, Â also Sports Illustrated, with this cover of Mikaela Shiffrin looking very real and really happy with her incredible accomplishments.
My daughter looked back and forth for a moment, then grabbed the Â Shiffrin cover and put it on top of the swimsuit issue, blocking it from view.
“There,” she said, satisfied, and walked away.
Yes. That’s my grrrl.